April 13, 2004

Change- the eternal constant

The days are getting hotter and soon the summer will be on us. The parching dry heat and the dusty days. There is always something poignant when the seasons change although the cold has fled and the days are sunnier . But then change is inevitable and the only eternal constant in our lives.

Our lives changed after schizophrenia. Perhaps it would have changed in a different way if this illness had not touched our lives-no one knows how. But one thing I know for sure. The relationships which have been forged with some wonderful people after they knew about my daughter's illness and the few relationships that have endured after the knowledge of this illness are the only ones that matter in our lives.

Every year, before my daughter fell ill, for two months, we went for a holiday to our home-town, a coastal town in Kerala. Most of the time was spent in a frenzy, visiting my husband's and my relatives. During these visits sometimes inconsequential banter was exchanged and sometimes civil rebuttals had to be rehearsed to fend off nosey queries. We had to often politely listen to malicious gossip. Sagacious or impractical advice on how to lead our lives was also offered by the large number of elders from both sides of the family. We were brought up not to confront or argue with the elders of the family. So we kept quiet.

After schizophrenia my husband and I have visited our home-town seperately as one of us had to be with our daughter. Our children do not want to go there any more. The visits are shorter and are usually made when one of our aging parents fall ill and need us by their side.

My husband and I have tried so hard to make my parents and his family understand this illness so it be treated like any other illness. It is like hitting your head on a wall crying to be heard while people walk past not seeing you. I remember my husband sadly telling me after the first visit, 'I dont think they will ever understand until they live with it.' He said that we were blamed for encouraging our daughter to study in a reputed university which she had gained admission to, on her merit. She should have studied in the home-town with her grandparents, then this would never have happened, they said. He had to hear the constant refrain- 'marry her off, she will become better'. I then resolved that I would try and make our families aware of this illness.

Knowledge gave me the understanding of this illness. So I went on my first visit armed with print-outs of material from this web site and others which scientifically explained the illness. First I gave it to my mother. She said she would read it later and then give it to my father. I then went to my husband's home and gave the material to my sister-in law to read. My father scolded me harshly for having given the material to my sister-in-law. 'What would they think? You should never have done something so indiscreet.' I tried to tell him that it was like diabetes which he had, an illness, a treatable illness. Besides medications, my daughter needed loving unconditional support from the family. I dont think he listened then.

At my husband's home I noticed that the topic of my daughter was discreetly being avoided. I wanted to scream aloud why dont you talk about my daughter's illness and that I was not ashamed of anything when I heard the various anecdotes of the achievements of my children's cousins being narrated. But the years of conditioning froze the words on my lips. I can recall the weariness seeping into me when I heard from my mother later that my father had burnt all the material on schizophrenia because he did not want such things lying around the house.

There was sorrow then but no longer now. I understand now that they were in denial. Parents and elders whom we look up to are created with different traits like any other. After eight years, at my husband's home, two of his sisters and a brother understands. That is enough. My mother can understand and my father is trying to. I can use the word 'mental illness' and 'schizophrenia' without them flinching. So there is hope.

Thank you for your comments.
Dear Forrest Grump, Thank you for those words of praise. I wonder if I deserve them but I am so honoured to be compared to your mother - a mother that you love and miss. You say you have to carry the cross. So someone you love has this illness. We can make our cross lighter when it becomes heavy by just living each moment. My prayers are with you and your family.

Dear Autumn, Thank you for responding. I am sorry that your grandmother cant remember because she is ill. My best wishes to you.

Dear Nick, Thank you for your response With so much of research being done on the brain I pray and hope that better drugs will come to combat this illness. As always my best wishes to you and your family.

Dear Moeder, I thought I was the only one in the quest for the roots of this illness and how it came to my daughter till you responded. Strange that both of our great grandfathers had it too. You are so right about shame and stigma. I hope with time it will vanish. Dear mother my prayers too are with you and your family.

Posted by survivor at April 13, 2004 02:47 AM


Dear Mother,

You said:

"At my husband's home I noticed that the topic of my daughter was discreetly being avoided. I wanted to scream aloud why dont you talk about my daughter's illness and that I was not ashamed of anything when I heard the various anecdotes of
the achievements of my children's cousins being narrated."

It is so painful when family members can't cope with the illness. My daughter Cassie who suffers from schizoprenia does not have a relationship with her two sisters. Part of it because Cassie has done some very hurtful things to the family and Cassie also abuses street drugs. I'm hoping as Cassie matures she will stop using these illicit drugs.

What hurts me so much is when her own sisters can't even call her on the telephone and just say hello ..... I'm thinking of you and I love you. I'm not asking them to take her to a restaurant or shop with her. I would just love to see them just call her. I know it would mean so much to her. It is like you said, they are in denial and are very afraid of the illness.

Our whole family is struggling with Cassie's illness and I pray that one day we can all be a loving family again.

Your writing is very inspiring. I'm so happy you've decided to share your story with the world.


Posted by: Moeder at April 14, 2004 08:05 AM

Ohhhhh, its so touching and similar things happened with me. when my wife was diagnosed Sz, I collected some of crucial info from this site and gave to my inlaws, they also just ignored and never wanted to discuss it. It was so sad. My parents also initially ignored but father is very observing , we used to discuss a lot. he finally got convinced, as our son is 3 yrs old, my father told that now I cam concentrate on job and he will take care of him. My mother also started partially cope with it. when my father told me that it is a matter of another ten years, when the son will understand that Mom is lacking something, life will be easier. It gave me so much consolence. Things got better, now wife is also improving///////atleast we should come forward without involving our egos//////nothing is more valuable than better understanding.
Still i will say if some possibilty is there, long vacation in village will help U. as ast summer I was with my grandma with whole family. IT REALLY HELPS.

Posted by: Nick at April 14, 2004 06:18 PM

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